There’s no way to sum up how to be successful at college with or without a chronic illness, but since the leaves are falling and the air is crisp, I’ve been feeling very nostalgic for my days at school in the mountains, so I thought I’d share some of the advice that helped me navigate those four years with you. Take it with a grain of salt — but maybe it will help you overcome some of your academic obstacles.
Yourself as well as others. While both my parents and nurses were very supportive in helping me manage my care growing up, they were also pretty adamant about teaching me how to do things on my own. When I was about 16, I wanted so badly to be a junior counselor at a summer camp, which meant I needed to know how to set up my own IV tubing. My mom transcribed handwritten instructions to take with me, and helped me practice on my American Girl doll (who also had a central line). I learned how to change my own dressing, set up my tubing, program my IV pump, administer antibiotics, and do whatever else would ensure I stayed healthy. This made the transition to college pretty seamless and even allowed me the opportunity to study abroad, because I was confident in managing my own care and navigating the resources in another country if I absolutely needed to.
When I first went away to college, it was not without its obstacles. I definitely felt homesick in the beginning before I found my own little family at school. When you’re away from home, particularly for the first time, it’s important to allow yourself time to feel those feelings. I remember there were times totally out of the blue when I would feel that knot form in the pit of my stomach and all I wanted was to be home with my family or in my own bed. Honestly, there were still moments during my senior year where I felt it. But I also reminded myself how fast those years would go by and how much I would miss that place and its people, and I tried to live in the moment as much as my heart would let me. My roommate and I also always had a countdown until the next break. It made it easier to view each semester in small chunks and get through one little bit at a time. Establish a routine. Get involved in activities. Stay busy. The more time you spend sitting alone in your dorm room, the more time your mind has to wander.
Early on in my college career, two of my roommates were both nursing majors. This made it super easy for me to feel comfortable opening up to them about my medical situation. They thought it was awesome! They loved watching me set up my IV tubing and had no problem making room for my drawers and drawers of medical supplies. This also helped me feel more comfortable explaining my situation to our larger group of friends, which would come to be super important later on.
While it’s always our goal to stay healthy and avoid infection, my junior year I landed in the hospital with sepsis. My roommate at that time, who had become one of my best friends, bundled me in blankets and my fleece cupcake onesie because despite my high fever, I still had chills, and drove me to the local hospital. From there, she helped me get in touch with my parents and stayed by my side for the better part of the night. At one point, when the nurse administered an antibiotic (incorrectly), I ended up having a nasty reaction to it and my roommate damn near chased the nurses down the hallway to make sure I got Benadryl.
Long story short, although it may be difficult initially to disclose your situation to friends, it is so important to find your allies so when those scary moments do arise, you do not have to face them alone.
Along with making sure I had a solid understanding of my actual diagnosis and care, my parents also made sure I had a solid understanding of how to speak up for myself, whether it’s to a teacher, a doctor or a classmate. I think college was when I gained a much better grasp of this I never wanted my disease to be a big part of who I was. After middle school and high school, I had gotten very good at sweeping it under the rug and brushing it off as just “some health issues I was dealing with.” It wasn’t until many sessions with a counselor on campus that I came to terms with the fact that my disease may not be a big part of my life, but it is a part of my life.
I was hospitalized for about a week during that stint, which is a long time for me. I know that’s peanuts for some other people, but for me, that was a pretty significant setback. During that time, I was a psychology major and it was the semester I was taking a statistics course. Because I was notorious for minimizing whatever was going on with my health at the time, I was determined to try to complete my assignments, regardless of how out of my mind I was on IV Benadryl thanks to that awful antibiotic.
In hindsight, I wish I would have been more open with my professors and admitted that yeah, I might actually need some time off. I know every professor I had at the time would have been extremely understanding had I simply been a stronger advocate for myself and been willing to have that conversation. Although it’s all a little blurry, I’m almost certain a few of them probably encouraged it when I told them I was in the hospital, but I was too insistent.
I wish I could tell you to whom and how to disclose your condition, but that is only something you can know. For example, I grew to be extremely close with my advisor and sociology professor, so I would’ve felt comfortable telling her anything. However, I may not have told as much to some of my psych professors, simply because we didn’t have that relationship. But had I told them I was dealing with some health issues, they would have been just as understanding. Sometimes you have to test the waters before diving in.
Be realistic about what you need for support. I was able to manage the majority of my care on my own, but that’s just because of how my health was at that time. My sister had a nurse that would come help her set up her IV tubing, and she had a close relationship with the health center should she have needed their support as well. Just as it’s important to build that trusting relationship with your peers, it’s arguably more important to do so with the professional supports you may need before you need them. Don’t hesitate to get in touch with the local hospital, so they are aware you’re in the area. Even transferring your medical records ahead of time could prevent a lot of logistical headaches should you need to access them in an emergency, and hopefully by doing so, everyone will already be up to date and can get to work on the current and present danger.
All campuses, public or private, need to abide by Title II and Title III of the ADA ensuring their school is accessible to all students regardless of ability. Usually there is someone on staff who’s job is to help students set up these accommodations and modifications. They can help you figure out ways to make physically navigating campus easier, or set up modifications that may help with the academic side of things. Don’t hesitate to get in touch with these people. They are not allowed to disclose anything you share with them to professors or other administrators without your permission, but they make sure you have what you need to be successful. While I didn’t have any accommodations in place at school, years later I did at my big girl grown-up job. Even just having accommodations in place, documented on paper, regardless of whether or not I needed to utilize them, made me feel like I could do my job and take care of myself without fear of repercussions.
More than anything, college was an opportunity for me to find my niche and rediscover my passions. It was a chance to learn about subjects I was deeply interested in, meet new people from all over the world, and take part in activities that made me feel whole again. Don’t hesitate to take advantage of every opportunity life throws at you. Find those allies and work with them to make shit happen. Don’t be foolish, obviously (she says, after having done some very foolish things), but don’t be afraid either. Join clubs, go to karaoke, play a sport (or find a friend with Wii Sports, because college sports are legitimately terrifying). Let yourself explore. Try new things.
Self Care. Self Care. Self Care. Whether you live on campus or off, attend full time or part-time, go for your associate’s or bachelor’s, college can be overwhelming. Trying to balance your health, school work, social life and hobbies is in itself a full -time job. It probably took me until senior year to realize that no party was more fun than going to bed at 10. Some nights, my roommate and I would pour ourselves a glass of wine, bust out our coloring books and put on a Disney movie. Let me tell you, those nights were more memorable than any of the parties I went to.
I’m not telling you to skip classes. You’re there to learn, and you’re paying a crap ton of money, so don’t blow it. However, I am telling you to stay in bed when you don’t feel well, communicate with your professors, prioritize sleep, and never feel guilty about choosing to stay in instead of going out. And if people try to make you feel that way, I promise by the next morning, they’ll wish they’d done the same. Take care of your body and your mind.
Take advantage of the resources your campus may offer. Don’t hesitate to access any mental health services available in the health center, even if it’s just to process life as it happens with someone who’s not your mom or your roommate. College was when I first started regularly seeing a therapist and it was definitely a game-changer. Take advantage of the fitness center, if that’s your jam. Go to a yoga or Zumba class. Swim in the pool if they have one. You may be tempted to eat pizza and ice cream for every meal, at least for the first semester. I strongly urge against this. Eat fruit, eat vegetables, drink water. Limit your ramen intake. You’ll thank me later.
The college experience looks different for everyone, and there is no right or wrong way to go about it. Regardless, it is a huge undertaking and you should be so proud for even considering it. When I say celebrate, I don’t mean wait until graduation when you throw your (ridiculously expensive) cap in the air and pick up your $75,000 piece of paper. I mean celebrate the moments. Celebrate the tenuous application process. Celebrate moving in. Celebrate binge-watching reality tv shows with roommates. Celebrate your independence. Celebrate learning new things. Celebrate terrible karaoke. Celebrate the mistakes, the comebacks. Celebrate the failures as well as the successes. Celebrate the growth that will come from this experience, whether you make it to the finish line or not. Celebrate the journey and everything you learned about yourself along the way.